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Thursday, 28 October 2010

Dave's Story

We met when I was 21. I was just out of university and full of the hopes and dreams of a child eager to start playing "grown ups". Dave was a roughty-toughty looking biker who'd been to public school! I immediately fell for his contradictions, his kindness and his charm.

When we met, I had just started on the Addenbrookes diet for Crohn's, and having rested my bowel for two weeks on nothing but liquid feeds, I was just a little way into testing ingredients one by one to see if they caused a reaction. Fate would have it that the weekend I met Dave, it was time to test alcohol and - I kid you not - I had carte blanche to drink as much as I could over four days to see if it caused Crohn's symptoms!

After a very merry weekend indeed, Dave asked me on our first date and insisted he wanted to cook me a meal. I was in a quandary : it was far too early to be explaining all about Crohn's and diets and bowels, (guaranteed to make most blokes run for the hills) but I really wanted to see him again. I tried hedging and fobbing him off, but he wouldn't budge. Reluctantly, I explained about the diet and broke the news that I'd only tested 8 foods so far, so any meal he cooked would have to use just tea, lamb, rice, carrots, apple, beef, tomatoes and green beans! He still insisted on cooking and, as he had no phone in the house he was renting, spent all day rushing to the phone box to check on ingredients. "Can you have gravy?" He asked at some point. I replied that I could, but only Bisto.

I arrived at 8, nervous and fluttery as you can only be on a first date, just in time to see him tipping bisto granules into his stew. I tried to stop him but it was too late. The granules have wheat in them and I'd already found out that I couldn't tolerate it. Mortified with embarrassment, I explained to Dave, but far from being cross, he just started fishing meat out of the stew and oh-so-painstakingly scraping off all the gravy! I decided there and then that this one was a keeper.

Just a few weeks later, I had my first really bad night. We were staying at my next door neighbour's house and I started to be sick and writhe with that old, familiar pain. I tried desperately not to let Dave see, and slipped out of bed, hoping to go home before he woke up. He caught me though, and when I explained he got really quite cross. "If we're together, we share everything, you can't keep running away" he insisted and then stroked my hair through the night through the suffering, getting me drinks and rubbing my back.

Just 3 months after we met, I started to get very sick indeed. I couldn't walk up the stairs and Dave set us up with a mattress on the floor, I couldn't eat at all and had gone back to surviving on liquid feed - 2 litres of the stuff a day. Dave always ate in the kitchen to save me the agony of watching and he made our flatmate do the same.

Dave was so shocked by the state of the system and it's inability to care for me properly, he told work he wouldn't be in for a month or so, borrowed his Mum's camper van and lived in the car park all through a bitterly cold February and March, making sure I got my liquid feed and probably saving my life.

Years went by, and despite all of our challenges, we were the happiest couple we knew. One by one our friends split up or had affairs, but Dave and I outlasted them all.

Dave had always been broody and I'd always felt that I wouldn't have children. We decided that if it ever didhappen, I would go out to work and he would stay home to look after the kids. However, as time went by, it got clearer and clearer that I wouldn't be working at all, let alone supporting the whole family. Doctors also started to tell me I may not have children at all due to all the meds and operations. It took Dave nearly 6 years to ask me to marry him. He knew that it meant giving up on the idea of children and he says he wanted to be very, very, careful that he really could accept a life without kids,

Dave needed a proper job to support us and slowly, he worked his way to the top, running a call centre of over 100 people with a budget of over a million. I carried on being ill and had four more operations. We lived in a adrenaline fuelled haze, constantly facing intolerable stress, debt and uncertainty. Dave was working long hours to allow us to barely get by, overtime in the morning, overtime in the evening, Saturday shifts, in the end something had to give.

Early in 2003, Dave had an enormous breakdown. He sat, huddled up in a chair, his knees pulled up to his chin rocking backwards and forwards, incapable of something as fundamental as speech.

It was obvious things couldn't go on as they were and we decided that Dave would take a three month sabbatical and that we would spend three whole months living in Italy, recuperating, recovering and just being together.

It worked and Dave slowly started to climb out of that enormous black hole of depression. He decided to set up a motorcycle touring holiday business. I think this was probably one of the happiest periods of his life. He'd always dreamed of working with motorbikes and the twisty, thrilling, mountain roads of northern Tuscany were his vision of heaven. To top it all, against all the odds, I found myself pregnant! Dave was so thrilled that I could never find the words to describe it here.

The Mediterranean diet and lifestyle seemed to suit me, but slowly, slowly I started to step back down that "sickness staircase"** I got sicker and sicker and in the end we had no choice but to come back and live in England. Dave was crushed. I think it might have been the closest we ever got to splitting up and I couldn't bear to see my illness affecting his hopes and dreams as well as my own.

Anyway, move back to England we did, and Dave, as always, found any old job to see us through and dragged himself in to an office every day, daydreaming of the scent of pine forests, jasmine and rich, dark coffee.

And there he's stayed. Trapped in a brain numbing office job, unable to leave because there's little other work available, earning just two thirds of his previous wage. He needs to care for me more and more and just needs a nine to five job that will allow him to get home in time to do the kids tea, bath them and put them to bed. Finally, he starts on the housework and usually collapsing into a chair somewhere around 10pm looking grey and clammy with exhaustion.

He had another breakdown last year. I'd had major surgery, then I had a stroke and then a massive seizure. His Dad was diagnosed with a life threatening condition and his Mum had a stroke too. This time we recognised the signs earlier, thus getting help sooner, but it was still a terrible, bleak time.

His life has been turned upside down by my illness, his dreams crushed by my illness, his career stunted by my illness.
When he took his wedding vows, he took the words more seriously than most "For better and for worse, for richer and for poorer in sickness and in health, til death us do part.

Sue.........I really don't know how you both cope, but, achieving so much, in spite of both your illnesses, has helped you balance the two extremes of your lives. As a very lucky man, I can only express my sincere admiration for your bravery and fortitude, you are inspirational.

and I bet he still says meeting you was the best thing that ever happened him? Love with the right person, is the only path. At least the fire still burns inside him :) Had he chosen the quiet life, the monotony would have killed him. I happen to be the romantic sort, and I had a choice once. Easy, viable, successful... or painful, daring but potentially rewarding. I say the two wee boys you guys have now, I hope, makes it plain to you both that you chose the right option :)

You should get Dave to post! :) Tell him we'd be nice (as long as he aint a soddin blue like that Kén chaacter) :)

Taking this with your previous posts, I guess that this must be on your mind more than normal. You are facing the prospect of becoming completely financially reliant on him, which has issues for you both.

I guess that in someways it's not just about the money, but also the extra mental stress (on partners) of putting another strain on them - the complete financial reliance of another adult, no small thing.

You illustrate very well the burdens that Crohn's has already placed on you both and that your partner is an individual with problems of his own. Problems that may soon be exacerbated by the government's plans to change the benefits system.

It does seem terribly unfair and unnecessary.

Do give Dave a hug from me by the way and yes, it would be fantastic to see you both - I will pm you at the weekend.

I'm still incredibly uncomfortable doing the "poor us" posts, but the comments I've had convince me it's the right thing to do.

Corinne - It is on my mind - all the time. There are millions of people who either physically or mentally can't speak out and if my posts have surprised those who thought they knew me, imagine how many other people you know living a life like mine. I heard a story the other day of someone with hard to control diabetes hiding their condition at work and sneaking off to inject their insulin, they were so terrified of losing their job if their employer found out.

The importance of this post (apart from its tenderness) is to show how the whole family shares and suffers from the illness, financially and emotionally. Life is already so difficult for the sufferer and those that have to watch, that any other difficulties should be done away with... instead sufferers and their families have to repeatedly battle, over and above that of the healthy family.

Sue - I came to your blog via Facebook. Like others, I am moved by your story and so angry at the coalition government's inability to see the wood for the trees. I run a blog called First Post and have a section on 'Titbits from Elsewhere' where I would dearly love to reprint one of your blogs about Dave and his support. You can see my blog at http://oldhack/squarespace.comPlease let me know if you are OK with such a reprint (with a link, of course)Thanks

Hi Sue. I have lived abroad for a large part of my life and also I have a small business which is based abroad too, so I've been thinking about this a bit.It seems to me a business organising motorcycle trips around Italy would best work with 2 partners, one in Italy and one in the UK.All Dave would have to do is find someone who is already living in Italy who is into motorbikes (we'll come to how to do that later). They would be in charge of organising the trips on the Italian side, and Dave could be in charge of finding and dealing with the people in the UK.The marketing could be (should be) done on the internet. This means very few overheads, little start-up capital needed and both partners could still do another full-time job until it started making a profit. Mind you, it might not need to make a profit as such. I have a Polish friend who loves Egypt and started a business importing belly dancing products (really) to Poland. They don't make much of a profit but they get to go to Egypt once a month and the business covers all of their expenses. Free holidays every month for little work. Very nice.How to find someone as a partner? Have a look at Labour International. There will be Labour party members who are living in Italy who could be interested or put you in touch with someone who is. Or post messages on forums for expats living in Italy, there are quite a few of them, Google it.In this way, Dave could have the business but still be working from the UK.Of course it would involve regular trips to Italy (flights are very cheap now) but I'm sure that wouldn't be a problem. ;-)

So glad to have found your blog (via FB). You are right to set out your situation now and then otherwise people simply do not realise how hard it can be to live with a chronic illness.

So many people just look at the person who is unwell....they never see or think about the knock-on to partners, children or the effect on the person who is ill when others around them get ill too or lose a job or whatever bad thing befalls them. In a family, you're all inter-connected. We're all inter-connected.

As someone with a chronic condition with a partner and children (one disabled) I recognise that feeling that you live in a house of cards and just one more false move by the gods will have the whole lot come tumbling down around all your ears. It may be the likes of me and thee who are ill but we still have dependents, partners and parents/relatives to whom we're bonded and connected and if something happens to them too then the feeling of desperation can be enormous.

Julian - Sorry, I just saw your comment. Dave still uses his holidays from work to organise tours and as you say, gets a free holiday, doing the thing he loves and gets paid a little bit if he's lucky.

Cusp - Wow, you really get it!! It's such a bizarre existence isn't it? You're right, I really wanted to try to get that across.We have to find such endurance so often and then we're told we aren't really trying!! I honestly think if politicians did a week in our shoes they would change the whole system.

Wikio

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.